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And My Journey Continues...


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6 replies to this topic

#1 DavinaRN

 
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Posted 13 January 2013 - 05:20 PM

Negative celiac blood work

Positive dietary response

Dec 26 ate at o'Charleys (gluten free menu), started with normal uh oh I had gluten response that progressed to anaphylactic shock and ER visit

Jan 11 food allergy testing. Not allergic to anything, but doctor is worried about Mast Cell disorder with wheat and/or gluten as the trigger (this disorder causes allergic reactions to triggers without having a true allergy) started on Zantac 300mg and Allegra 360mg a day. Dr feels I am safe to eat whatever.

Yesterday we ate out (cheeseburger with chili, no bun, FF). I felt a little of my gluten response. I mean just a little (could be the Zantac helping-even though its a tummy med, Techanically it's an antihistamine). About an hour later I started itching ALL over, came home and took the Allegra and within 30 minutes I was fine.

Today, I just took both meds in AM so that it is more in system during day. Wednesday I will start the 24hr urine test and drop it off Thursday am and have blood work done at that time. So my journey continues, but I'm still avoiding gluten/wheat since it is a trigger for something in my body.
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

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#2 shadowicewolf

 
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Posted 13 January 2013 - 05:31 PM

Sorry but that sounds like a true allergy to me. Skin testing is not 100%. If that is what causes it, then avoid it at all costs. I'm surprised you weren't given an epi pen to carry.
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#3 DavinaRN

 
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Posted 13 January 2013 - 06:44 PM

I alredy have them due to bee allergy.
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#4 Takala

 
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Posted 14 January 2013 - 03:05 AM

You may want to limit the "eating out" routine, until you have this situation diagnosed. Do you have an inhaler, in case your breathing constricts? (wheat can cause asthma in some people) And sorry you found out that restaurants can vary on how they handle cross contamination. Scary. And thank God for antihistamines.
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#5 Seifer

 
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Posted 14 January 2013 - 06:12 AM

caseine and chili are potent allergies, with cheese I get an itch all over and chili raises my pulse sky high
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#6 DavinaRN

 
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Posted 14 January 2013 - 01:43 PM

Takala I'm back to not eating out again, just not worth it.
Seifer, thing is with this disease he is looking at I'm not truly allergic. My skin test was 119 foods, all negative.

Oh well it is what it is.
  • 0
Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#7 GottaSki

 
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Posted 14 January 2013 - 04:39 PM

Hi Davina-

Might want to do a bit of reading about histamine intolerance / regulation problems - for some reason it is completely off the radar for American docs
....took me a very long time to find this important piece of my wacky health puzzle.

If you can't find info let me know - I've got some great links - just no access to them at the moment.

Hang in there - you will figure this out :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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